About the Campaign

What is Ehlers-Danlos Syndrome and
Hypermobility Spectrum Disorders?

Ehlers-Danlos Syndrome is a complex genetic, connective tissue condition resulting in faulty collagen. Collagen is known as the glue that holds the body together. Because of this fault, patients' joints can partially dislocate and sometimes fully dislocate on a daily basis, leaving us in varying degrees of pain.

As the human body contains quite a large amount of this protein, it can impact almost every system in the body. For example, eye sight and hearing may be effected. Healthy collagen is needed for holding body parts together like skin, joints, muscles, ligaments, blood vessels and internal organs. A whole catalogue of issues may arise; some, life threatening. 

Hypermobility Spectrum Disorders varies to EDS, but has a huge degree of overlap in symptoms and issues (most notably, hypermobile joints). How much these joints over extend will vary from patient to patient, as hypermobility is on a spectrum. Read about the differences in EDS and HSD here. Many patients use aids (crutches, walkers, wheelchairs) while others do not need to. You can read more about EDS and HSD criteria here.

Some people are double jointed without it causing any issues or pain at all. When it causes pain and is the result of faulty collagen, the patient is likely to have either EDS or HSD. 

It is common for those with EDS or HSD to share certain comorbid conditions, which make for even more complex cases. Our digestion is often effected, we may be intolerant to a lot of foods, we may struggle with balance issues, many have trouble regulating things like heart rate and blood pressure (dysautonomia). There are countless comorbidites that may all need medical care, and not every patient is the same.

Symptoms, as well as severity of certain symptoms, can also depend on what type of EDS the patient has.

In some cases life-saving or life-altering surgery is required -Chiari malformation and Craniocervical Instability (CCI) are two such problems that may require invasive surgery. In the near future you can read about some of these cases in the personal stories part of our site (more coming soon!).

So what's the issue in Ireland?

Early diagnosis and intervention is fundamental in limiting the possible longterm affects. Prolonging basic treatment can, and has, lead to people with EDS/ HSD becoming very de-conditioned. Those who have late diagnoses and years of no medical intervention may struggle to work, function socially and at home and sometimes cannot walk very far unaided.

Worldwide, Ehlers-Danlos is classified as a rare condition, and because of such, it is not uncommon for medical professionals to know little about the syndromes. Awareness is needed globally. In the US The Ehlers-Danlos Society has been working hard at this for years, funding research and leading the way. In the UK, Ehlers-Danlos Support UK and The Hypermobility Syndromes Association highlight their own efforts to bring about awareness and reform to patients on the British aisles. In Ireland, we have Irish EDS & HSD and EDS Awareness Ireland, both providing support to the newly diagnosed and their families.

The one difference we face in Ireland compared to other nations is that while we also have rheumatologists, GP's, nurses, emergency room doctors unaware of these conditions, we have no appointed (by the HSE) qualified consultant to deal with Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorders. Not a single one. When questioned previously on the subject, the HSE and health minister inform us that in fact, all rheumatologists are knowledgeble about the condition. This simply is not the case, and saying so is an insult to us patients, and the parents and families of patients, who spend years on waiting lists. Passed from one consultant to the next because we are met with specialist after specialist who either has not heard of the condition or who does not believe it exists.

The very few public places that are helpful to EDS and HSD patients are understaffed, undertrained and underfunded. Hospices like the one in Harold's Cross in Dublin unfortunately cannot always deal with the complexity of Ehlers-Danlos Syndrome due to the comorbid conditions many patients come with (even though it is often cited by the HSE as being a treatment place for us). Privately, there are a couple of rheumatologists in the country who have some experience of the conditions. These are few and far between, as well as expensive. Furthermore, while they are knowledgable they are not fully qualified. Many patients do not mind such logistics, however these diagnoses can and often are taken into question. 

A growing amount of Irish patients, like many UK patients, travel to the hypermobility unit in London for consultations, physiotherapy and testing. On top of no consultant or hypermobility unit, Ireland also has no upright MRI machine (sometimes vital for diagnosing chiari malformation and CCI). Flights and accommodation add to the price tag for Irish patients. As well as this, many of us struggle to travel long distances comfortably due to our physical pain and tire easily from these long journeys. 

As these are genetic conditions, whole families may be effected. Parents with multiple children may not be able to afford to bring them all to London. Some parents will forfeit their own diagnoses and care if it means they can pay for their children to access treatment instead. Families in Ireland shouldn't be living like this. 

Because the HSE state that they can in fact take care of our medical needs here in Ireland (while simulatanoulsy playing down EDS and HSD rates and issues), we get no where with the Treatment Abroad Scheme and struggle to take up the Cross Border Healthcare Directive when needed. Furthermore, these schemes do not cover private facilities (such as the hypermobility unit in London). 

In regards to surgeries for things like CCI, we must go further afield to either Barcelona or the US. Again, with no financial help from the state. Families, friends and whole communities pick up where the Irish government 
fail us. 


Simply put -we, and our conditions, do not exist in Ireland according to the HSE. 

We want to change this. Please get involved, follow us on social media (links below), attend our now monthly protest gatherings outside Leinster House, and help us tell the health minister and the HSE that enough is enough. We exist and we deserve healthcare #EDS4IRE

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FAQ

My Story

I was diagnosed with hEDS in my late 20's/ early 30's, after a life in pain -at times, agony. My pain as a child was put down to my hip dysplasia (still untreated) and "growing pains". I had physiotherapy which was not suited for hypermobility conditions, as they hadn't realised, and so I found it very painful to do. Eventually I learned to not talk about it and assumed it was normal. 

As an adult, after years without care, my health worsened. I saw numerous specialists in various areas, spent my 20's on waiting lists. I was eventually informed that I probably had Ehlers-Danlos Syndrome, but no one seemed to know anyone that could diagnose it. So a few years passed before I found someone  privately. 

By that time I had deteriorated so much that I found it very difficult to find even a physiotherapist or occupational therapist to keep me on as a patient. They would access me and say, "I'm sorry, I'm not qualified for your case". I am slowly clawing back parts of my life and eventually managed to find a physiotherapist here at home, but have had to pay out of pocket and have friends fundraise for me to travel to the UK for tests and treatment. 

Travelling to London was the best thing I ever did. The consultant there was able to suggest loads of medications for my comorbidities which now give me some quality of life. 

I partially dislocate daily, on most of the joints in my body -hips, shoulders, ankles, wrist, elbows, knees, toes, fingers. The list goes on. I use a walker or a cane on good days, a wheelchair on bad days. 

 

I was a youth leader but 
unfortunately I am now unable to work at all -a combination of intense pain and chronic fatigue mean that every day is different and unpredictable. 

In 2017 I had an upright MRI in London and was diagnosed with chiari 
malformation
and instability on bending the neck forward. While symptoms are hard to deal with at times, I am one of the lucky ones as I currently do not require the life saving surgeries that can arise. I don't have to find the 100k and travel to Barcelona or the US which some Irish families have to do. 

I'm on several waiting lists here in Ireland for various issues, most of which for years. I was on one in particular, to explore my diagnoses. It was sent by another hospital several 
years 
 ago, asking  them to access me 

for both EDS and dyspraxia. 

The doctor expressing great concern 

that I needed rehabilitation. Since that 
referral was made I received my  diagnoses
 privately in Cork, visited London twice, received further diagnoses, have clawed back from post 
infection ME, tried numerous 
medications... I recently, finally had this appointment. I can't imagine how worse my life would be if I had waited and not went to the UK and privately here in the meantime. The current system is simply failing us.


My story isn't special, or unique -it's a very similar story for many Irish patients. This cannot continue. People are literally being left to rot. We cannot let another generation of EDS patients go undiagnosed and untreated. Please support our campaign -Sign the petition and get involved.
 

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Kitty Colbert

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